From Diabetic Renal Failure to Transplant
Research type
Research Study
Full title
A Longitudinal Constructivist Grounded Theory study of the transition of the diabetic patient with chronic renal failure from transplant waiting list to post transplant
IRAS ID
255839
Contact name
Melanie Phillips
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
4 years, 4 months, 1 days
Research summary
Summary of Research
The study aims to develop a theory of transition for the diabetic patient who has developed renal failure through their diabetes and has been offered a simultaneous kidney and pancreas transplant as a treatment option: from transplant waiting list to post transplant.
The methodology used to develop this theory is called Constructivist Grounded Theory and as the name suggests the theory is 'grounded' within the data. The data for this study is from interviews with the participants, prior to their transplant and then post transplant.
From the participants own words and experiences the aims of the study is to develop a theory of the process of going from a waiting list for transplant to after they have had the transplant.
Participants for the study are invited to be part of the study if they are listed for simultaneous kidney and pancreas transplant. The Royal Infirmary Edinburgh is the national centre for Scotland and Northern Ireland for simultaneous kidney and pancreas transplant and where the patients will be recruited from.As this is a longitudinal study , to allow time to follow up the participants post transplant , the participants will be invited to join the study when they are an estimated 6 months or less from the date of transplantation.
The participants will be asked to have two and in some cases three interviews , one pre transplant and one , possibly two, post transplant.
The interviews will be conducted at the Royal Infirmary Edinburgh , unless the participant would prefer them at their referring unit.The interviews will be no longer than an hour , they will be recorded on an encrypted recorder and transcribed for coding and analysis.
The data from the interviews will shape the direction of the study as it is an on-going process of analysis.
Summary of Results
Individuals with diabetes and renal failure are best served by a transplant for long term survival. For some individuals who are fit enough for prolonged surgery that can last up to eight hours, there is a treatment option in simultaneous pancreas and kidney transplant or an SPK transplant. An SPK transplant treats both the diabetes and the renal failure. SPK transplant is a specialised treatment and makes up about 4 % of all transplants in the UK, similar in number to heart and lung transplant (NHSBT, 2022). In Scotland one centre serves all of Scotland and Northern Ireland and performs around twenty SPK transplants per year. The patient experience of SPK transplant is has little research before this study. This study using a constructivist grounded theory approach and a longitudinal design, enrolled ten participants listed for an SPK transplant in the transplant centre in Scotland and followed them through from waiting list to transplant.
This research developed the theory Becoming Transplanted that describes the processes involved in waiting for transplant, transplantation and post transplantation. The participants all of whom have chronic illnesses in the form of diabetes and renal failure describe holistic illness suffering. In Becoming Transplanted the acceptance or avoidance of holistic illness suffering affects the process named creative adjustment and the ability to reframe self. Relational frame theory and behavioural change therapy; acceptance, commitment therapy was used as a basis to further develop the theory of experiential avoidance and inform creative adjustment and reframing of Self (Hayes et al., 1996 p.1154, Hayes, 2019, p.20, Hayes et al, 2006 Pistorello, J., Levin, M.E., 2012). Creative adjustment describes the process of acceptance of holistic illness suffering and is facilitated by people and processes, namely family and friends, health care professionals, Becoming Transplanted and the participants themselves.
The theory Becoming Transplanted provides an understanding of the patients who are listed for SPK transplant and the challenges that they face but also where interventions are most useful. The understanding of the nature of suffering is the first step to alleviating suffering (Cassell, 2004). The theory would also suggest that the benefit of facilitators of creative adjustment in acceptance of holistic illness suffering would show benefit from an individualised patient – centred approach (Natellio, 2001) by health professionals in providing support for this patient group.REC name
London - Central Research Ethics Committee
REC reference
19/LO/0850
Date of REC Opinion
16 Aug 2019
REC opinion
Further Information Favourable Opinion